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I Have Learned What is True.

Severely Affected does not mean you have Severe ME, this is so important. Severe ME is serious multi-system dysfunction. In our two decades of experience, we have never known anyone recover, or go from Severe to Moderate.We are greatly concerned about an increasing number of stories claiming "recovery, which, to us, have more to with poor definition and criteria used, rather than the unlikely reality of profound physical dysfunction getting better, for no reason.This poem, written by Linda, who has Very Severe ME, confronts, head-on, the pernicious, dangerous notion that "if only" they are brave enough, think the right thoughts, have enough will power, are positive enough, a Severe ME patient, with the help of a therapist, will "get well".I cannot deny my physical reality,The severe and serious nature of my illness,Just because others who do not experience it themselves,can so easily and wrongly do, for me.I cannot deny the total constant multi- layered all over pain,The repeated tormenting crushing paralysis,The uncontrollable shaking muscle spasms,The stroke like episodes,The inability to digest carbohydrate,The difficulties with swallowing,The muscle dysfunctionThe painful photophobiaThe profound noise sensitivityThe hypersensitivity to physical touchThe severe cognitive dysfunctionBecause they dominate every moment of my existence.Severe ME has so totally impacted my body on every level Such that it totally incapacitates me and paralyses me at whim, not at my bidding, creating moment by moment of unpredictable torment.Totally damaged for over twenty years,I have learned what is true, what is possible, what is variable,what is impossible,What is bearableAnd what is intolerableYet borne anywayWhat is violating,What is trueAnd no matter how hard I try to think thoughtsThat will raise me above my incapacityThat will push through my invisible, multi- level disability,That will make me feel betterThat will enable me to do moreThat will vanquish this neurological disease from my body once and for allI know within my whole being that this is not possible,Not because I am too negativeNot because I am too weak willedNot because I am not trying hard enoughAnd certainly not because I am afraid to tryOr happy as I am, thank you very much,Or a lazy shirkerOr a fraudsterOr a liar,But because there is something fundamentally broken and damaged and not functioning in me on many levels.Multi-system dysfunction means just thatIt does not mean:"oh dear, I have been thinking the wrong thoughts to get well"Or "oh dear,I am so depressed I cannot face life.Or "oh dear,I must think positive thoughts to ignore my realityOr "oh dear, I let my body get flabby and lazy from deconditioning"Or "I have to trick my mind and body into working by pretending to be well"When, blow me down, it simply is not true!No, I know how to be positive, believe me.I know how to hold on to hope when no hope is there at all,When you don't know even if you are going to die because no one can help youAnd no one knows.I know how to grasp for a better moment, believe me.I know how to be in indescribable agony for decades ,actually, with no drugs to touch it.I know how to survive the torture of noise, shutting my muscles down repeatedly, day after day after interminable day, screaming round my head for hours on end.I know what it feels like to be violated by the horrendous sound and vibration of noise, repeatedly for years on end and be unable to escape, but have to endure it's torture.I know how to live in blank spaces where no thought is possible, no movement possible, no nice distractions with books or the telephone or films or friends or comfort food to sustain the dullest hours and years of life, no conversation possible, no comprehension possible, no function possible at all.I know how to keep going every day, to try and break the paralysis that straight- jackets me as soon as I wakeI know how to live with the unbearable pain that pressure and physical contact bringI know how to cope with my body shaking continuously for hours on end again and again with no drugs, no understanding, no support,no respect, no help.I know how to live in silence from necessity to survive.I know how to live with no visitors,no social chit chat, no physical interaction with the outside world,No family gatherings, no celebrations possible, everything completely and utterly out of reach of physical connection.I know how to keep living, keep hoping in goodnessEven when I have been harmed repeatedly by medical professionals,ignorant people,deliberately ignorant people, people who have lied to me,people who have misled me, people who have betrayed me and let me down,people who have used me.I have survived all this and more, for over two decadesAnd I AM STILL HERE!How positive is that!I do not need therapists or coursesTo tell me how to think and feel and act, to tell me what to ignore and what to do Or to patronise meOr to misinterpret or mistreat meOr to encourage me to deny my illness.What I need is a proper clinical service,One that supports meOne that investigates meOne that gives physiological explanation,One that offers treatment pathways,One the does not deny or neglect or misrepresent me,One that makes safe recommendationsOne that understands that I cannot interact normallyOne that recognises my needsAnd provides for them respectfully and honestlyWith pretence I will get well for no reasonWith no abandonment With no acknowledgment of my symptoms and their underlying causesAnd no pretence that there is nothing wrongAnd says that I do not need medical or clinical inputAnd does not abandon meOr harm me.How positively thought through that would be,If Cognitive Behaviour therapy was actually appliedNot to the people with MEBut to the fatigue services And the negatorsAnd the psychosocial therapists and forced them,instead, to change their attitudes and fundamental principles instead?To finally see and acknowledge the truthThat they are wrongAnd dangerousAnd misinformed.What positive thinking that would be!To get them to admit that they are the ones with the wrong thought In their headIt is simply their wrong understandingAnd misperception of us,Instead!

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GUIDE FOR ME/CFS
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